The newest research about living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS)/fibromyalgia, with personal observations
(the most pertinent parts of long articles will be highlighted for the reader)

About The Author

On March 4, 1988, I was diagnosed with Post-Viral Syndrome, which CDC soon decreed had to be referred to by the silly name "Chronic Fatigue Syndrome". My symptoms definitely traced back to a severe flu-like illness with a 105 fever for several days in mid-February 1987.
Despite relapses and increasing symptoms, I continued to work full-time as a legal secretary/paralegal -- even when I had no Quality of Life because I had to spend every non-working hour in bed so I could work the next day -- until February 2000, when months of severe sleep disturbance and ever-increasing symptoms (due to sleeping 2 hours or less a night due to the pain) cost me my job.
The doctors and judge didn't want to hear about failed attempts to return to work; they just assumed I don't want to work. "Don't confuse me with facts, my mind is already made up."
Since ADA will not force an employer to provide the accommodations I need, I started my own business so I could lie down whenever I needed to. I do proofreading and editing from home.
Visit www.CFSfacts.org or CFS Facts at YahooGroups or on Facebook if you want to learn the truth behind the myths.

Wednesday, September 9, 2009

We only hear all this crying and moaning about the deficit when it's something for regular working people, and not a powerful lobby. And of course, the Republican'ts are right out there in front of the Hypocrisy Parade:

And yet, many of the lawmakers who argue that the health care reform legislation is "too costly" are the same lawmakers who supported the Bush tax cuts.

Their own voting record demonstrates that health care reform is not a matter of costs, but a matter of priorities.

<snip>

Their position seems to be that showering benefits on the wealthiest five percent of taxpayers and leaving the bill for future generations is preferable to making health care available for all at a much lower cost and paying that cost up front. That demonstrates a different set of priorities than most Americans have, but it doesn't demonstrate much concern about costs.

Great news! After more than a year of planning, it is finally time toopen the new private clinic dedicated to the treatment of patients withChronic Fatigue Syndrome (CFS). The new clinic, The Chronic Fatigue &Immune Disorders Research and Treatment Center will open in October inKendall, FL.

The purpose of this email is to share this exciting news and to answer asmany of your questions about the new clinic as I can. In order to see asmany patients as possible and to increase the number of physicianstreating CFS patients, I am making a few changes in my practice.

First and foremost, I will NOT be leaving the University of Miami or theclinic there. We are hiring a new doctor for the University clinic whowill be able to see more patients by expanding that clinic. Dr. Irma Rey,a very qualified and trusted colleague of mine, will be a wonderfuladdition to the UM CFS Clinic.

• At the new private clinic, patients will see practitioners that I havefully trained in my methodology and approach to CFS. I will supervise andreview the care, and meet with each patient with the clinic practitionerto create and implement a customized treatment plan. This method oftreatment and consultation will enable me to train more medicalprofessionals in the intricacies of CFS as well as to help more patients.

• The new private clinic will be a fee-for-service clinic in regards tooffice visits. This means that office visits will need to be paid for atthe time of service. They cannot be billed after the fact. We will,however, provide you with the paperwork ready to submit to your insurancecarrier for out-of-network reimbursement. At this time, we are unable totake Medicare at the new clinic.

• The new clinic will offer diagnostic testing helpful in determining theseverity of the illness and the various underlying components of theillness (immune, autonomic, sleep, etc). Fees for diagnostic tests will bebilled directly to your insurance provider. We will also be able toprovide disability assessments and assist in documenting the severity ofillness for disability claims.

I am thrilled by the excitement and energy being generated by this newclinic. I hope you are excited as well. Now it is time to really beginplanning. I need the following information from you if you are interestedin becoming a patient at the Chronic Fatigue & Immune Disorders Researchand Treatment Center.

Please email, mail or call us with the following information:

_____ Yes, I want to be a patient in the new clinic.Name _____________________________________________________________________

Health debate short on evidence-based science

By Shannon Brownlee and Michael Wilkes

The public's faith in President Barack Obama's plan for health care reform is fading. Proposals ranging from the public insurance option to reimbursing physicians for end-of-life counseling are mired in a debate that's as overheated as August temperatures. Even the seemingly self-evident idea that the nation has a moral duty to make sure all citizens have basic access to health care is up for grabs. But there's one aspect of health care reform that California voters support almost universally: better medical evidence.

A poll released Sept. 2 shows extraordinary levels of enthusiasm for policies that would help doctors and patients know what works in medicine, what doesn't work and for which patients. In a poll of 800 California voters conducted by Lake Research, 88 percent of respondents said they believe it is important that doctors have access to scientific evidence that compares the effectiveness of different treatments. Nearly half, 46 percent, consider it extremely important.

Of course they do. Patients go to the doctor looking for effective treatment, and this being the 21st century, they assume that their doctors' recommendations will be based on up-to-date science.

Yet all too often that's not the case. According to the prestigious Institute of Medicine, only about half of the treatments, surgeries, tests and minor procedures that doctors recommend are backed up with sound medical evidence. The other half? Doctors have only theory, tradition or marketing by the pharmaceutical and medical device industries to guide them.

This lack of valid science hurts patients and costs the nation billions in wasted dollars annually. Take lumbar fusion surgery for simple lower back pain – pain that isn't caused by cancer or a major accident. Between 1993 and 2003, spending for lumbar fusion rose 500 percent, despite an almost complete lack of sound evidence that this invasive, potentially risky procedure is effective. It might relieve pain for some patients – and worsen it for others. Surgeons and patients simply don't have the information they need to predict ahead of time who is likely to benefit and who will be harmed.

Many, if not most, patients are also in the dark about the very real dangers posed by any hospitalization. Out of the 34 million patients admitted to the hospital each year in the United States, as many as 190,000 die not from their disease but from infections acquired in the hospital or avoidable medical errors. Poor-quality medical care kills more people than AIDS, breast cancer and car accidents combined.

On the flip side, there is inappropriate undertreatment. Even when sound evidence exists, patients don't always get the care they need. About 25 percent of heart attack patients don't receive an aspirin and beta blocker within 24 hours of being admitted to the hospital, despite solid science showing that these drugs can cut the risk of a subsequent heart attack by 20 percent.

The same is true for countless other conditions and tests. In some cases, the root cause is poorly trained doctors, but most of the time, we just don't have effective ways of monitoring quality and providing doctors with timely, reliable evidence.

Voters know that getting care they don't need, and not getting care they do, is bad for their health. According to the poll, 80 percent of voters think it is a serious problem when doctors provide unneeded medical treatments, and 79 percent think it's a serious problem when they don't get needed care. Ninety percent think doctors should be required to tell their patients when there is no scientific evidence to support a treatment recommendation.

Why isn't the issue of medical evidence front and center in the health care debate? Maybe because doctors have not always been truthful in telling people what they know and don't know. Many physicians are either unwilling or unable to take the time needed to fully explain where uncertainty exists. As a result, 65 percent of California voters are under the mistaken impression that most or nearly all of the health care they receive is backed up by scientific studies.

The results of this poll, which was conducted for the Campaign for Effective Patient Care, a nonprofit founded this year with initial support from AARP, California Association of Physician Groups and Blue Shield of California, should embolden legislators and policymakers to forge ahead with legislation that supports medical research aimed at providing practical answers to everyday medical dilemmas. Two of the three health care reform bills wending their way through Congress contain provisions for research that compares the effectiveness of different treatments. The bills would also reinforce the infrastructure that's needed to disseminate results to both doctors and patients.

There's a lot of misinformation being circulated by opponents of comparative effectiveness research. Some are politically motivated and simply want to see Obama and the Democrats fail. Others have a financial interest in keeping patients and doctors in the dark. Either way, Americans deserve better quality health care, and voters know that the only way to get there is through better medical evidence.

Shannon Brownlee is a senior research fellow at the New America Foundation, a nonpartisan thinktank based in Washington, D.C. Dr. Michael Wilkes is the director of global health at the University of California, Davis.

* * *

Another study, referenced elsewhere in this blog, shows that it takes, on average, 17 years for research findings to become standard treatment. Meanwhile, 1,000,000 Americans with CFS continue to suffer because doctors continue to prescribe useless anti-depressants instead of the anti-virals that are more likely to work, and if the patient tries to educate the doctor, she's ignored.

Monday, September 7, 2009

Jerry Lewis is on TV, talking about the many things the MD Association provides to patients with muscular dystrophy: treatment, wheelchairs, financial assistance, volunteers to provide hands-on help to patients.

And then there's the CFS Association (www.CFIDS.org) which does lobbying and fundraising for research, but provides none of those tangible things that can make life easier for someone who's sick/disabled and therefore poor.

I cannot tell you how many times I have asked for help and been told, rather snottily, to go to the association for my disease rather than asking some unaffiliated person or charity to assist me. They usually have some glowing story about how some relative got all the help they needed from the charity for their disease, and therefore, the same help should be available to me. When I say it is not, I am called a liar -- either that I'm lying about the availability of help through CFIDS.org, or that I'm lying about having been diagnosed (i.e., that CFIDS.org won't help me because I don't actually have a CFS diagnosis). No one can fathom that the association for my disease doesn't provide all the same benefits as other disease charities.

Well, for one reason, because CFS gets $1 per patient per year from the government for medical research -- versus hundreds of dollars per patient for other diseases. Since Day One, the bulk of medical research into CFS has been privately funded. Our Association devotes all its energies to raising money for that research and lobbying the government for more government funds for research; they can't spare the time/money to organize a volunteer corps, or to purchase wheelchairs, etc. We patients are pretty much on our own.

Churches are pretty good at providing help for the short term (i.e., a couple weeks after surgery), but not for years on end for chronic debilitating illnesses. And if you aren't a member of a church, either because you're not a believer or you're physically not well enough to attend, forget it; you won't get any help from any church.

Because I've fought so hard to stay on my own two feet, I "don't look sick" (and, in fact, some of "Jerry's Kids", if you see them seated, don't look sick, either). Because I won't give in to a wheelchair, preferring to exhaust myself walking, I'm assumed to be healthy enough to do everything that needs doing. I actually get more help from people when I invoke "my bad back acting up today" than when I tell them I have a chronic illness that makes life difficult every day.

That's the reality of life with CFS.

If you don't believe me, please feel free to contact CFIDS.org and ask them what direct-to-patient services they provide. They'll say No to everything that Jerry Lewis has just listed off that MDA provides to their patients.

It's easy for people to say they don't want to pay more taxes, that the needs of the disabled should be met by charity, but the simple fact is, people don't give enough to CFIDS.org to allow them to do that for us. I suspect, just like federal research money, cancer charities get hundreds of times more money per patient than CFS charities, even though our need for assistance is just as great.

Curious how your taxpayer dollars are spent on health research? Here's how you can find out what's being funded -- and contact NIH if you're unhappy with either the types of research or how many dollars are being spent on CFS.

U.S. Department of Health and Human ServicesNATIONAL INSTITUTES OF HEALTH NIH NewsNIH Office of the Director (OD)http://www.nih.gov/icd/od/

Comprehensive funding information for NIH grantsand contracts is now available on the NIH ResearchPortfolio Online Reporting Tool (RePORT) thanks to anew, user-friendly system called the RePORTExpenditures and Results, or RePORTER.

"With the addition of RePORTER, we have taken abig step toward providing NIH's broad community ofstakeholders-including biomedical researchers,research administrators, science policy makers, andmembers of the general public-with richerinformation, accessible in a form designed to meettheir diverse set of needs," said Sally Rockey, Ph.D.,acting deputy director of extramural research.

"In addition to a being a public service to ourstakeholders, it's a good example of thetransparency and openness in government thatthe public deserves and has come to expect."

User-defined searches allow the public to refine,export and analyze results and provide insights intoNIH spending, as well as research results acrossNIH-funded projects, institutions, investigators orscientific concepts.

Searching for grants funded by the Recovery Act ismade especially easy by a checkbox that limitssearches to that area of interest.

Plans for improvements in RePORTER includeallowing users to personalize their experience. NIH'sgoal is to provide users the ability to save favoritesearches, set alerts for new grants, publications andpatents, and even export the entire RePORTERdatabase.

RePORTER is the newest tool on the RePORTwebsite, NIH's comprehensive online repository ofreports, data and analyses of research-relatedfunding.

RePORT provides a wealth of data on NIH'sresearch-related grant and contract funding, includinggeneral reports and statistics, funding by research,condition and disease categories, new datavisualization tools, and more.

RePORT is available at: RePORT.nih.govThe project search tool, RePORTER, is availablethrough the RePORT site or by going directly to:ProjectRePORTER.nih.gov

The Office of the Director, the central office at NIH,is responsible for setting policy for NIH, whichincludes 27 Institutes and Centers.

This involves planning, managing, and coordinatingthe programs and activities of all NIH components.

The Office of the Director also includes programoffices which are responsible for stimulating specificareas of research throughout NIH. Additionalinformation is available at:http://www.nih.gov/icd/od/

The National Institutes of Health (NIH) -- TheNation's Medical Research Agency -- includes 27Institutes and Centers and is a component of theU.S. Department of Health and Human Services.

It is the primary federal agency for conducting andsupporting basic, clinical and translational medicalresearch, and it investigates the causes, treatments,and cures for both common and rare diseases. Formore information about NIH and its programs, visit:www.nih.gov

A year ago I tried examining the question of why ME/CFS patients have been so unable to advocate for themselves effectively, particularly in the arena of fundraising.(1) Except I did not find my thoughts particularly enlightening, even as I have continued to feel there are good reasons to explain our lack of political and financial initiative that I could not quite articulate.

However I was reading Cort Johnson recently recount the experience of being overrun by Multiple Sclerosis patients on Capitol Hill a few years back while participating in a CFIDS Associations Lobby Day.(2) The comparison of MS and ME/CFS patients provided me with a lens through which to explore -- and answer -- the question of "where is everybody" with what feels like far more satisfaction.

Let me begin by noting that while there are more people who have ME/CFS than who have MS, only 18% or so of ME/CFS patients have been diagnosed. Thus there are actually more diagnosed MS patients than diagnosed ME/CFS patients.

MS patients have a variety of effective treatments to choose from (that are covered by insurance companies) including anti-virals, interferons, and yes, CBT, including consultations with cognitive psychologists who, through rigorous psychometric testing, can identify for the MS patient his or her cognitive strengths and weaknesses and train the patient to compensate for those weaknesses.

Doctors, insurance companies, families, friends, and communities at large all consider Multiple Sclerosis to be a legitimate, serious, and debilitating disease, meaning that friends and family members are much more willing to advocate for MS patients.(3) Indeed as a child I can remember participating in the annual MS Read-a-thon after reading about it in the back of a young adult novel I had received.

The impact of this legitimacy on patients cannot be overestimated, even if most MS patients don't even know they should appreciate it. There is no internalized doubt and stigma ("maybe I just really can't handle stress", "maybe I am just weak-willed"). No internalization of an overwhelming narrative that invalidates the seriousness of their illness ("I don't have a real disease like cancer or Rheumatoid Arthritis or AIDS so I shouldn't bother the doctor"). No shame and fear that by admitting their disease - or simply stating the *name* of their disease - they will immediately be labeled histrionic, lazy, and/or hypochondriacal.

And most important of all, patients with Multiple Sclerosis do not have post-exertional malaise. While it is true that chronic fatigue is a very prominent part of having MS -- so much so that some researchers even refer to this aspect of MS as "chronic fatigue syndrome" -- MS patients do not appear to have difficulty metabolizing oxygen. Their VO2 max levels do not drop significantly after engaging in aerobic activity, saving them from the overwhelming lethargy and apathy post-exertional malaise produces.

My best friend and godfather, Talal, has MS. Because he began Avonex (a form of Interferon B) and Amantadine (an anti-viral) within a few years of symptoms appearing, he's still in his PhD program. His primary symptoms are fatigue and cognitive problems -- brain fog, problems with short-term memory/working memory, organization, etc. While he gets tired easily and struggles with sequential tasks like recipes, he does not have problems with post-exertional malaise. He can still read methodology (i.e. dense, esoteric text). He can still write academic prose. He can still teach and make a monthly salary. He can still work an 8-hour day. He can even help friends move with his pick-up. He suffers little to no pain. He walks unaided. He goes to the gym most days. He's currently in the Middle East doing research for his dissertation.

I, on the other hand, had to drop out of my graduate program. I live on $674 of SSI + Food Stamps. For much of the last five years I have not been able to read books (despite owning 1200+), though my reading ability has been improving since increasing my dose of Acetyl L-Carnitine substantially and starting D-Ribose. Methodology, of course, is still out of the question. I too have a hard time following a recipe -- or even just making myself a bowl of cereal in the morning -- because my working memory and sequential tasking are poor. I walk with a cane because my balance is poor (some days I feel almost hemiplegic). I take 120mg of morphine a day plus extra-strength Vicodin (Lortabs) for constant, burning pain. I'm only awake in the evening. I have to have someone come in and do my laundry, cook my meals, and help me bathe -- someone who may or may not understand how sick I am. The only writing I can do is cobbled together blog posts and journaling. My state's form of Medicaid does not cover treatment for CFS, though there is no real standard of care anyway and my doctor knows almost nothing about my disease. I haven't been able to drive for four years now both because of pain that's unrelated to CFS and because of poor spatial perception that is most certainly related to CFS. My boyfriend lives in the UK but I cannot get on a plane to go visit him there because I absolutely must lay down after 3-4 hours, while the flight just to the East Coast is 6 hours, with the UK another 5 hours after that.

It is true that Talal is not necessarily the average MS patient, nor am I the average ME/CFS patient. But I do think the very differences in post-exertional malaise, legitimacy and access to treatment are essential to explaining why MS and ME/CFS patients differ in their abilities to advocate for themselves.

Unfortunately we cannot get legitimacy and access to treatment without advocating for ourselves. Except we cannot advocate effectively for ourselves without legitimacy and access to proper treatment. I still do not have an answer for how to overcome this insidious conundrum. However I am most certain the answer is not to blame the victim, i.e. ME/CFS patients.

Originally posted at http://tiny.cc/50QQg

See also: "Found" at http://tiny.cc/hqrTl

____________________(1)See: http://tiny.cc/g9v0v

(2)See: http://tiny.cc/ehcRd

(3) Especially mothers. Some of the staunchest and most effective advocates for ME/CFS have been mothers (Pat Fero, Annette Whittemore, Jill McLaughlin – to name a few). Indeed my own local support group fell apart when one of our members left – taking her mother, our group facilitator, with her. The CFIDS Association may well have made a serious strategic error in not addressing Pediatric ME/CFS more aggressively from the beginning, even if adults are more likely to develop ME/CFS than children.

Read about life behind the surface at http://behindthesurface.blogspot.com